Welcome

Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and
others concerned about HIV/AIDS. Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the
conversation yourself by registering on the left side of this page.

Privacy Warning: Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive
and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a
username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own
physician.

All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators
of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please
provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are
true and correct to their knowledge.

To anyone who happens by, the goal of this thread is to take on a challenge--the challenge of addressing what HIV stigma is doing to us, individually and collectively, and to starve it---cut off what it feeds on. If you are so lucky as to have never self-stigmatized, been the recipient of stigmatization or doled out stigmatization related to HIV/AIDS then this might not seem like an effort worth joining. But, you're here, therefore you know someone who's affected by stigma and this will take a bunch of folks to discuss the topic, let alone coordinate effective actions.

Motivated by Tim's (a.k.a. Moffie) 10-16 thread " To Hell with Stigma!!!" and his references to Bobbi Campbell and the Denver Principles, I went hunting in order to first understand who Bobbi was.

Bobbi Campbell (January 28, 1952 – August 15, 1984) was an early United States AIDS activist. In September 1981, Bobbi became the 16th person in San Francisco to be diagnosed with Kaposi's Sarcoma. He was the first to come out publicly as a person living with the as of yet unnamed disease. He became known as the "KS Poster Boy" (even appearing with his partner on the cover of Newsweek magazine on August 8, 1983), and wrote a column for the San Francisco Sentinel from January 1982 describing his experiences. Bobbi, who was also a registered nurse, joined the Sisters of Perpetual Indulgence at the time of the health crisis in early 1982; in his drag persona as Sister Florence Nightmare, Bobbi co-authored the first San Francisco safer-sex manual, "Play Fair!", written in plain sex-positive language, offering practical advice and adding an element of humour.

In 1983, Bobbi and Dan Turner, who had been diagnosed in February 1982, founded the People With AIDS Self-Empowerment Movement or PWA Movement.

-----------In three years, Bobbi Campbell accomplished much. What could a group of us do? We could: Define the problem(s). Design solutions. Develop methology. Deploy!

If Bobbi were alive, he would likely be surprised to see the growing statistics, the complacency and that stigmatization still plays such an active role in the world of HIV.

Oh Em, I am trying so hard to personally deal with the stigma. I have made a lot of progress just this year. I guess I feel that my way of dealing with the stigma is to gain more confidence by sharing my story, or at least my point of view, with people who stigmatize, namely the negative population (or those who don't know they are pos).

I have disclosed to a few friends this summer, and they have stuck around, which to me, is progress. This is a personal step in the right direction for me, because I am tired of hiding, tired of people pointing the finger at us. I remember in another post from you, you typed:

Its just a virus.Its just a virus.Its just a virus.

I feel that if I can be strong, then others may not look down upon this virus as they do. Taking my baby steps for the greater good as best I can right now.

Thanks for sharing your baby steps, Cindy. And, yes, you're right, I did type in a recent post " It's just a virus." hence my concern that the world is still seeing 12,000 infections per day when it's preventable and knows no socio-economic bounds.

I believe stigma is fueling the infection rate and then continues to suppress once a person's infected. I suppose some information from an epidemiologist could shed light on how much estimated manpower would have to be thrown at such a number in order to begin to reduce it.

There are 2.9 MILLION of people that died of AIDS in 2006. You and I may well die of AIDS if something goes wrong in our medication or how our virus adapts. How can you imagine stopping the stigma about HIV/AIDS when almost THREE MILLION people die of it every year?

It's a sexually transmitted disease, remember. It's not diabetes or cancer, it's something you get having sex, and sex is one of the most complicated subject on the planet. Sex, by itself has so much stigma, that it is quasi impossible to disconnect HIV stigma from what people think about sex.

I will never ever think myself that HIV "is just a virus". It's a plague, it's nasty, it's ugly, it's one of the worst virus we ever seen. No wonder people are afraid of it.

Moffie's post is largely about us, carrying the virus, being strong and telling the world that we are still human beings, that we must not be denied care and that we must shake the world so that catastrophic events like what we are experiencing now with HIV are taken care of and hopefully wiped out of the planet.

So what is this stigma we're talking about? Years of education has done nothing to stop the fear that HIV conveys. We've been hammering everyone for more than 20 years that it's okay to kiss an HIV positive person, but yet, even if everyone knows it's okay, there is this fear and then we see them coming to the forums and ask if there is any risk.

If stopping HIV stigmatization is saying that this is just a virus, then I believe this will work when the death rate is reduced to zero. Until then, we need to find something else.

For my part I'm already out there. I disclosed myself as a man living with AIDS in The Rocky Mountain News last June. I'd been selected as a participant in this years "Fitness Challenge" run through the RMN. I used the opportunity to offer a bit of hope to others in the Denver area living with HIV/AIDS. Since then there's been a total of three articles run with me in them. And... I am the biggest looser. Kicked ass in the challenge.

Since then I've written a series of articles for a local fitness paper, and will be featured in our companies newsletter. The theme of all the articles is living w/, statistics regarding, and how to protect yourself from HIV/AIDS.

Have I run into sigma since the journey began? Yeah.. there's been a couple of instances. But I don't let, and I won't let anyones prejudice, ignorance, or malicious words get to me. If you're unknowledgeable I'll happily work with you to learn. But if you're close minded, stupid, or ignorant in word or deed I'm ignoring you.

It's late here, and I'm droopy tired and running out of words. More later.

What ya thinking of here? In what way do you envision us being the change?

Logged

Life is short, Break the rules, Forgive quickly,Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

I didn't mean to downplay the virus by quoting Em. The context in which she wrote those words "Its just a virus" in another thread said to me that this is something that we CAN deal with if we set our minds to it. If we gain strength from others. If we stand up and persevere like Bobbi Campbell did in Denver. That's how I see it. Do you see where I'm coming from with this? Do I think overcoming the stigma and the virus will be easy? No. I know firsthand that it isn't. I just believe that we have to start somewhere, but its not easy. I feel that I can make a difference.

I understand your frustration with the numbers, the millions. For me, personally, this frustration is motivating me to open up to more people, to NOT have such a stigma placed on this virus. I believe that this is the point here with Em's post. I have started disclosing to more people, I am here on this site and in a group getting support from other pos people, I am trying my best to be strong in the face of this virus, hoping that what I do will make a difference in the lives that I touch.

We can't do this alone, we have to work together to try and overcome these odds.

MilkerI finally found the thread from which Cindy extrapolated the quote. Read Main Forums / Positive Women / Re: How Do You Handle the Loneliness? from Sept 22 to a woman named Peaches and I think you will soon see the intended, limited context.

I certainly don't want to see the thread derail/digress over something taken out of context. I wish it hadn't been quoted, but such is the way of forums. I understand Cindy's intentions. I hope you understand mine.

DenverThank you. Sounds like you're making great strides in Denver. Thanks for including all that you've been up to. I'm tired, too. What do I envision? To start talking about what we can do to contribute to defeating HIV/AIDS stigmatization. I believe we can do something or perhaps find an existing effort to assist.

Yes, it is just a virus. There is little good about it, plenty bad, and yes it's deadly to the tune of three million deaths a year. Did I screw up and become infected? Yes, but so what. I made a shitty choice at a shitty time in my life. And now I have a shitty virus. (literally) But I'll be dammed if that means I'm spending the rest of my life riding in the back of the societal bus.

For me Milker it's a matter of focus and choice. Could the meds turn sour, sure. Can I do anything about it? Some, and I do what I can to minimize that possibility. Could I die, sure. But I'm not going to sit on my ass waiting for the grim reaper. I'm not going to focus on the worst of possibilities. And I'll work for the best of possibilities.

I don't envision myself in the same league as any of the original activists. They were courageous in a fashion I can only hope to touch. But I can honor their sacrifices, work, passion and victories by doing my best to build upon them. And live my life as fully as so many of them would have loved to have lived. If they'd only had the chance to.

Logged

Life is short, Break the rules, Forgive quickly,Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

I think it is great that people can go out and shout it from the mountain tops but some can not. I don't think the ones that can not shouldn't be made to feel it is there fault because they are not ready to yet. As I have said in the past disclosure is not an easy thing and like Cindy I am taking baby steps to be more open about it. I have disclosed in the past and it has been horrible. Just recently disclosed to my room mate and it was fine which gives me hope. I think a lot factors in to why some are being quiet about it, some reasons may be the reactions they have gotten or fear they will get, another is location, some areas are just not accepting and may put that + person at risk if they were to mention it and some has to do with the culture you were raised up in. I think there should be more understanding towards those who just are not ready to be open about their status. You may think what I am saying is just excuses but there is truth to it too.

Personally, I am doing what I can and taking small steps. I would love to be like you, Em or even like Moffie but realisticly, it takes time to deal with it all. I think what has made me want to speak up just a little bit more is being tired of hiding it. But all I ask is let those who have a hard time with it deal with it on their own before you ask them to just come out with it. Like I said in my one thread, what may be easy for some is not easy for others.....

Queen, first, I'm not like Moffie (edited to add: but intend to take some of his urgent advice and, at a minimum, become more of an activist). He's a veteran, outspoken, well spoken and way out. I'm not. I'm on my way. And so are you. And so is Cindy. And many others. And yes, hiding takes its toll, no doubt about it. Taxes the immune system when it needs no more taxing.

But...

This was not intended to be a thread about everyone coming out, (although that wouldn't be a bad outcome).

The intent was to take a look together at HIV/AIDS-related stigma and its impact on us, the world, the increased infections rates and what, if anything, we can do to starve the stigma.

That's all. It's no cause for comparison between what one person does versus another. It's taking time to look at something that isn't a virus but is just as infectious and is helping the virus thrive. Stigma. Powerful. Life Threatening.

I think it is great that people can go out and shout it from the mountain tops but some can not. I don't think the ones that can not shouldn't be made to feel it is there fault because they are not ready to yet. As I have said in the past disclosure is not an easy thing and like Cindy I am taking baby steps to be more open about it. I have disclosed in the past and it has been horrible. Just recently disclosed to my room mate and it was fine which gives me hope. I think a lot factors in to why some are being quiet about it, some reasons may be the reactions they have gotten or fear they will get, another is location, some areas are just not accepting and may put that + person at risk if they were to mention it and some has to do with the culture you were raised up in. I think there should be more understanding towards those who just are not ready to be open about their status. You may think what I am saying is just excuses but there is truth to it too.

Personally, I am doing what I can and taking small steps. I would love to be like you, Em or even like Moffie but realisticly, it takes time to deal with it all. I think what has made me want to speak up just a little bit more is being tired of hiding it. But all I ask is let those who have a hard time with it deal with it on their own before you ask them to just come out with it. Like I said in my one thread, what may be easy for some is not easy for others.....

Queen,

My dear, I wish you wouldn't do that.......

Of course there are some who are not going to be the screamers, and certainly times have changed since the early '80s when we all KNEW we were going to die, so it didn't matter who knew. Just a thought to remember here, for every one who is on the front lines, there are many who work the sidelines and the crowds, doing their part to extend and influence knowledge socially. I for one, celebrated you disclosing to your room mate, and still you come to mind when I am typing one of my posts about coming out of the closet. You have inspired my recent return to the cry for us to do something about this terrible state of Stigmatization. Just thought you needed to know that.

I hope all of you know that Moffie is becoming an old man, and along with that an urgency to keep on pressing forward due to the lack of time in my life. There is little doubt that I will probably expire in the next ten years or so, because my bodies organs are simply too worn out to keep on processing these medications that are keeping this 60 year old alive. As Em has stated, I am very outgoing in the first place, and yes, I am "In Your Face" with ignorance around HIV, due to the huge amount of information and press that has been availible for everyone to learn about this disease; yet they still make assumptions, and still stigmatize the whole of our population.

I guess my other thread was meant as more of a pep talk to get some of our newest members to understand that there is a real foundation for action against stigma, and disclosure is simply one way to accomplish that. I also understand that for many, disclosure is a scary and ominous proposition. Coming from the Gay community, makes it easier to disclose, because we learn in adolesence that either you let people know who you are, or you live your whole life with a secret that keeps you very limited and confused. Claiming your sexual orientation is so very parallel to claiming your virus, that many are capable of coming out of the HIV closet, due to their experiences with GLBT issues.

I plead with all of you to understand that I don't and never will critisize anyone for not coming out, but I also will always admonish you that the HIV closet is full of depression, emotional issues that will damage your immune system and in the end, will possibly keep you much sicker physically than if you were to come out and claim your virus and embrace the fact that this is now you for the rest of your natural (or unnatural ) life. Yes, I know it aint easy, because it really aint easy for most of us, but once you do, then it becomes easier and easier. For those that have a negative reaction, (like my family, who disowned me in the name of Jesus) let them go, because they wouldn't have stuck with you for the rest of your struggle anyway. They are more interested in what the rest of society will think of THEM for having someone with HIV around them. Cut em off, and let em go. They really won't matter to your future anyway. My family cut me out in 1985, but that didn't stop me from moving forward with my dreams and accomplishments, so I know it will work for anyone who makes the choice to live free and clear.

Queen, I am sorry you felt beat up with my other thread, that was far from my purpose. I celebrate you and Cindy for your amazing growth in the last year and I think both of you need to know that.

Love, your very loudmouth brother in the struggle; Tim, aka Moffie.

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

The goal of this thread is to take on a challenge--the challenge of addressing what HIV stigma is doing to us, individually and collectively, and to starve it---cut off what it feeds on.

Excuse me for posting twice, but I think the above sentence really defines this quandry, and also asks all the pertinent questions. If we stick to this, I am really confident we will come up with some concrete ways to deal with this, outside of disclosure.

Just wanted to say......

Love,

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

WAD 2007 is just around the corner and it's a wonderful opportunity for each of us to do something in our own communities.

It took me a while to sort out my feelings about not actually making it onto telly portion of the Stephen Fry's HIV and Me program - and part of me is pissed off that the residents of the Isle of Man missed out on the opportunity to come face to face in their living rooms with one of their own who is living with hiv.

Doing the interview with Mr Fry has given me the courage to do two things this coming WAD. On the day itself, I'll be addressing the first WAD gathering the Rock has had in a few years and I suspect I'll be the first ever Rock resident living with hiv to get up and say so publicly.

The day before WAD (it's on a Saturday this year) I'll be doing a live Manx Radio interview - complete with phone in. I understand that the presenter normally allows more air time to subjects that generate a lot of phone calls, so I'm hoping to mobilize quite a few people to phone in during the program.

If I can raise my voice in an island community with a population of around 80,000 (where everyone either knows you or knows someone who knows you) then, well, some of you lot who live in more densely populated areas can too. If you don't like the stigma, do something about it.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

All of you are an inspiration to me. I just feel so helpless over here, just one lone voice. I wish, oh how I WISH that more people around my community would stand up and do something to make a difference. Maybe I'll have to be the first one to take a stand, but the thought of it spooks me. I feel that there is strength in numbers.

I'm just going to have to bring something up to my support group regarding WAD, we can't just sit idle.

These "pep talks" are motivating, and are exactly what I have wanted to see here in the Forums.

I just feel so helpless over here, just one lone voice. I wish, oh how I WISH that more people around my community would stand up and do something to make a difference. Maybe I'll have to be the first one to take a stand, but the thought of it spooks me. I feel that there is strength in numbers.

Cindy, that's just it. We sit around and wish someone else would stand up and be the first - and we're all sitting there thinking that and so nothing happens. I know for damn sure that if I continue sitting on my backside, nothing is going to change. Part of me doesn't want to do any of this. I wish someone else would do it too. However, I've been sitting here for six years now and nothing has happened - in fact, we've gone backwards. I've gotten to the point now where I can't, in good conscience, sit and do nothing but wish.

Shit, it spooks me too. What spooks me more is the ignorance, the lack of services, the lack of testing, the lack... just plain lack.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

In 1999, when I started fighting in this state of Arizona, and making myself totally annoying to the state and local health departments; just getting anyone to listen let alone spend a minute talking about the holes in services and prevention, was a blantant miracle. Last Saturday, we had our second AIDS Walk and there were 50 runners, and eight sponsor organizations. Mind you this doesn't seem like a miracle, but when you factor this number over one of the biggest car shows in Arizona, a town made up fully half with Army Intelligence personell, and the rest a mix of Baptists and Mormons; this is an astounding turn out.

Then when I least expected, I got a call from the High School in Benson, Arizona this morning begging me to sit in the HIV booth at a Teen Maze in their high school next Tuesday. Now this town IS almost 90% mormon. This was so far from what I expect out of this community, that as I type this post, I am still stunned. I know, I know, I shouldn't be surprised that the work is finally paying off, but why now? Now that I have decided to cut back on the amount of work I will allow into my life. Hell, don't know the answers, but I did tell the lady I would be glad to spend a day talking to teens about HIV. I also had to change a Lab appointment from that day to tomorrow, but it just doesn't matter when they are asking......

Just thoght I'd share.

Love,

« Last Edit: October 17, 2007, 04:19:39 PM by Moffie65 »

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

Hmmm, well, I don't feel beat up by your other thread Moffie. With my earlier post, I was just trying to get others to understand that some just are not ready to speak up just yet. Hell, I am just opening my mouth after being silent for 10 years and I have to honestly say it wouldn't have happened if it wasn't for these forums or people like you Moffie. I am actually taking the advice of a forum member who posted to my thread and told me just to work with being comfortable in disclosing to my room mate and being comfortable in my own home.

I do have an appointment at my ASO on Halloween and I will then see what I can do to make a difference there. I have sat by year after year on World AIDS Day but will make an effort this year to be out there and be seen and heard.

However, I've been sitting here for six years now and nothing has happened - in fact, we've gone backwards. I've gotten to the point now where I can't, in good conscience, sit and do nothing but wish.

The rising worldwide infection rates, funding cuts, job discrimination, problematic access to meds, and fear-stricken people who distance themselves from parents, siblings, and friends are but a few of the examples of evidence that we've gone backward.

And, I too, cannot in good conscience, particularly on the day of Christine's death, not make an effort to turn these trends around.

I know any feelings of uncertainty will lessen only when I walk more deliberately into the truth of my life, the truth of our lives.

Stigma is shortening our lives, editing our lists of options, strangling our creativity...but, in part it's because we are allowing it.

I like reading what people are doing -- Ann, Denver Toad, Tim and others. It's good to see what various regions of the world are up to and WAD is definitely the date to steer toward for specific media attention.

So, going back to Holbrooke's article (the one Dachshund posted a week or so ago about the 12,000 infections per day)---that's linked to stigma. Stigma also is a factor that prevents people from getting tested. I was so moved by that article, I outed myself (because I'm not affiliated with an agency) in order to see if my state government would allow me to register in a pre/post testing course next week. They did! I'll be certified as of next week and then I'll find a way to hook up with RHT (Rapid HIV Test) training so I can administer and counsel.

I e-mailed my clinic and told them I would be happy to participate in the portion of their WAD conference for medical professionals that features PLWHA on a Q&A panel. They've asked me to do it for a couple of years, but it's never worked out. This year, I'll make it work out.

Considering what Ann is doing on her Rock, I'm going to try to find a media opportunity that will go all out on the topic of stigma, its effect on prevention and testing, and emphatically reinforce what IS happening worldwide in terms of rising infection rates. I also hope to encourage interviews of local ID experts and health officials.

When I find the opportunity, I'll post about it.

Meanwhile, MRSA made the headline of our city's paper today as killing more people than AIDS. It just may turn out that the spread of MRSA will help to shine a light on HIV/AIDS again. MRSA's not spread by sexual contact so it doesn't have that morality angle to consider when people discuss how it's contracted. Although not always, it can be a devastatingly swift killer and death usually gets people's attention.

Well... i am a sort of out person in my circle. My mother and sister knows about my status. My friends and my last two sexual partners know about my status too. I have participated in sensibilisation trainings delivering my testimony as a person living with aids. I still want to do more... i agree that the more people look at us like how we really are, they will understand we are just human beings and deserve respect.

I am not out publicly here because i risk my work, i am doing some activism with few people (who are not poz) that i think are doing things right. In my country there are only 4 to 5 people who are open publicly abour their status (haven't been able to meet all of them... the one i met she was already tired of doing so much work alone)... not even the "leaders" of activist groups are open about it, i want to live free and out of stigma. I am trying to arrange things to ensure my professional future will depend on me only, so i can speak freely without worrying about being fired.

For whatever we can do, count with me... i am only one here, but i know with the time there will be more and more... when people see the light shinning in front of them they will also realise there is no reason for them to fear.

Last week at group one of the guys said he had just passed his certification for Rapid Testing and Counseling. He goes to a rehab clinic and does testing there for addicts. I asked our group leader and this guy how they deal with the emotional side, the counseling? I asked how they held back the tears and they said they don't. When I think of it, I "counsel" people on HIV every time I disclose. Its not the same as giving a positive test result and counseling, but its a step in that direction for me, at least.

I disclosed to someone just tonight, a few hours ago, in person. He is a good friend and doesn't have much info on the virus. I gave him the transmission thread which we read together, I told him the virus does NOT discriminate, and then I explained how the stigma is beating us down every day. I explained that things need to change, we need more funding, we need more awareness.

...I still want to do more... i agree that the more people look at us like how we really are, they will understand we are just human beings and deserve respect.

... i want to live free and out of stigma. I am trying to arrange things to ensure my professional future will depend on me only, so i can speak freely without worrying about being fired.

For whatever we can do, count with me... i am only one here, but i know with the time there will be more and more... when people see the light shinning in front of them they will also realise there is no reason for them to fear.

Count with me,

Juan Carlos

Gracias and Good Morning Juan! We will count with you and we will count on you. Your countrymen are fortunate that you intend to do more. Over time, this thread should yield some substantive information as we get our legs beneath us. Em

I disclosed to someone just tonight, a few hours ago, in person. He is a good friend and doesn't have much info on the virus. I gave him the transmission thread which we read together, I told him the virus does NOT discriminate, and then I explained how the stigma is beating us down every day. I explained that things need to change, we need more funding, we need more awareness.

I feel that my baby steps just got bigger tonight!

~Cindy

Hi Cindy, congratulations for your steps... every one of them means a world for others and will definitely make the path easier for those coming after us. For me there are several reasons why disclosing is important... and just two weeks ago i received a big lesson. I disclosed to one of my last two sexual partners, one i didn't meet since 8 months ago. We broke up a month before i was diagnosed. I told him my status ... with the intention he will get tested. At the end... he told me he tested reactive to Elisa test by July this year. It was a big shock for me... due to all the implications his answer had. The worst of it all was that when he got the results in the red cross... they treated him really bad and didn't even suggested him a place where he could find support. Since July 07 until two weeks ago he had done nothing about his status... not even getting the western blot, he was feeling lost and simply waiting for "the end".

It was hard for me to tell him about me, it is never easy... but sometimes one has to do things right. We talked about his Elisa results and the possibilities how it could have happened. We are in peace, wherever it came from... if i was involved he knows now it was not intentionally. What i am glad is that when i opened with him about it he felt so much better... he asked me for help, to connect him with someone who could help him... he knew really nothing about this, not even what CD4 means. Two weeks ago we met my counsellor at the foundation where i get my psychological support, and last Monday he went to get the western blot done with someone from the foundation, whatever the answer might be... he knows now he is not alone. He knows now he is not going to die soon... and he also knows now he does not have to fear anymore not to feel ashamed in case he test poz.

And i... i learnt that by disclosing we really help others, sometimes really change their lives for good.

This thread is causing me to cry this morning, due to all of you doing YOUR part to make a difference in this struggle. I am so moved by just how much has happened this week here, let alone what will happen in the ensuing weeks before WAD. Today I am taking a break and going with my sweetie to the dentist in Tucson, but I will check back tonight and see what has transpired today.

Miss Queenie, thanks for being in the world, and thanks for committing to do your part on WAD, you have no idea what lies in store for you as you spread the word of knowledge to your sisters in your world there.

For the rest of you, thanks so very much for stepping up.

Love,

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I think that all of us living with HIV do educate people about the virus. Some of us do it very quietly, as Cindy said, everytime we disclose our status to someone. Others are "in your face" and some are somewhere in between.I do believe that the more we come out the more awareness we'll bring and hopefully the less stigma; but until we can be honest about sex I don't see how we can make advances in the war against AIDS.We live in different places and have different backgrounds. We all have our own ways of dealing with the virus and we are at different levels of comfort with our own HIV status.I've been poz for over 10years now. Although I have always supported organizations such as AMFAR, ACT UP, I was one who did not talk about my HIV. I did the walks, fundraising events, talked to people about prevention but I never told anyone I was poz (except to the people I had sex and a my closest friends).

Then, 3 years ago I finally told my parents, and last year I began to let go of my fears and my shame. I felt shame in so many levels but most of all I felt ashamed and guilty because "I let down" the generation who really suffered the brunt of this epidemic. The reason I say this is because I knew about HIV and AIDS, I lost a cousin in 1888 and still I tested positive years later. He did not know HIV existed when he was infected, I did, and in a twisted way I felt that my seroconversion was an insult to his memory.

I am still dealing with a lot of issues but I have come to terms with many of the things that caused me to stay in the closet about my HIV. I am now a very vocal HIV/AIDS "spokesperson" where I work(even although I have not come out yet, this is going to happen soon) where I am always organizing teams for the AIDS walks and other events in my area. I recently joined a group called HIV STOPS WITH ME and the positive speakers for Silicon Valley, and I am riding from San Francisco to L.A. as a positive rider in next year's AIDS/LifeCycle.It took me over 10years to get here and now I hope to carry on the message of that generation that I let down. I will do my part to stop the stigma, to prevent new infection and to preserve the memory of my cousin and his generation of heroes.

Logged

POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

well hopefully the day i spent today talking to a load of 15/16 year olds has made a little bit of a difference. even tho many of them were little bastards and i had to shout over the noise sometimes, many of them were also listening and lots of them told me they thought i was brave for coming and telling them. see, even those who perpetuate the stigma know the effects of the stigma.

i feel exhausted and scared. i talked to one group about stigma and how that frightens me more than the virus itself. that im less scared of getting ill and dying than of what PEOPLE could do to me. im not sure if i ever realised that truth as strongly as i do now. i dont think ive ever before let myself realise how frightening that stigma and the unstated threat of attack or ostracisation is. again i feel very lucky with regards to the people who surround me.

i did 4 sessions, 2 before lunch and 2 after, and in the cafeteria at lunchtime i could hear kids talking about me saying 'is that the one with hiv'. i can only imagine what it must be like for people who go through that every day. BUT it also shows something is beginning to change - they didnt say 'that's the one with aids'. and if they knew how many people were positive and didnt say, theyd soon get bored of pointing us out.

all through the day i was so conscious as well about how lucky i am to live in a country where i can stand up and talk to a group of kids and not once be restricted in what i could say. all i talked about was hiv. i was able to mention anal sex, oral sex, fingering, multiple partners - basically anything i wanted in any terms i wanted. no mention of abstinence, no mention of marriage. just talk of how to protect yourself. they were teaching those kids that to want to have sex is the most natural instinct in the world, and trying to ensure that when those kids did the inevitable then hopfully they will do it safely. this as well i believe lessens the stigma.

i challenged them all: if you look at someone who 'accidentally' got pregnant and you look at me, why do you judge me differently? we did the same thing just one of us got pregnant and one of us got a virus. i dont know if theyd ever thought of it in those terms before.

i told them that i was standing up talking to them because even if i couldnt ensure that they would always have safe sex, at least maybe i could change the way they look at positive people. i really hope so.

i was standing up there talking to them for all of you who dont or cant say anything. hopefully one day you will be able to stand up as well. that's not a judgement, not a criticism, it's a challenge.

"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

You did GOOD! I especially liked reading how the kids referred to you as someone with HIV, and not as someone with AIDS. The fact that you were so freely able to discuss the ways that the virus is transmitted is great to read. So often, I feel kids are distracted during seminars, talking amongst each other, texting on their cell phones, you know what I mean.

But if you just reached one teen today, you did what you were supposed to. I think you reached more than one teen during your seminars. Job well done.

tonight my wife and i are going to visit an aids advisory council at a local high school. i learned recently that here in new york state the education dept regulations require all public high schools to form these councils to, among other things, review hiv curriculum taught in the school.

the advisory council is made up of school administrators and nurses, health instructors (all grade levels), students, members of the PTA, and local clergy.this is a first for us, because this serves as an audition to see if in the future the school will invite us back to actually speak to a health class ot two. but to me & my wife, it is a necessary start.

in the past, we used to get invited to speak at high schools and colleges all the time. ryan white funding used to provide much needed prevention dollars that funded teen peer education groups in our county, and those groups used to invite us into the health classrooms on a regular basis. however, as EM has pointed out, decreases in funding has reduced our visits dramitically.

we love going into the schools for many reasons, but as it pertains to the issue of this thread, stigma can be greatly reduced if we are able to reach our youth, who are being infected just as rapidly as any other demographic. we try to point out to them just how easily aids can spread in their school district by using a CDC patient zero chart from another school in our state. we then pose a credible scenario how that could happen in their school.

we also talk about my son, who has provided us with 4 grandchildren (thats the good news) but the mom was 17 for the first, 19 for the second. how our city has a 1 in 4 teenage pregnancy rate and how that means there is a hell of a lot of unprotected sex going on. and how, even with him living with 2 positive parents, young people do not fear the virus. we ask them why?

we also ask them to pass onto their parents, especially the single parents, our story of how we were infected, as both my wife and i were infected trying to re-enter the dating scene by new partners.

you have all heard and/or lived these stories throughout your life with hiv. as a lobbyist for the past 13 years, we are often reminded by aids lobbying organizations that the most effective means of reaching our legislators is by telling our own personal stories. the same holds true for getting out there and teaching our youth. when it comes from the heart it matters. you may not reach every student. hell, what teacher does. BUT YOU WILL MAKE A DIFFERENCE!

last year i participated in "our dignity" project at staying alive in new orleans. at some point the filming of myself and the many others who agreed to participate in this project are intended to be used for future aids advertising campaigns and training dvds. one obvious campaign is to help reduce stigma by getting people to fear the virus, not us. joining the project (on their website) is another means of helping in that effort.

i remember bobbi campbell from reading the book "and the band played on". in 1994 this book fueled the fires in me to begin getting involved & in regaining control of my life. i have felt the pain of what i believed to be aids stigma/discrimination 3 times in my 22 years: from a neggie partner, from the military, and from my employer. although each bruised me in their own particular way, they eventually added more fuel to my fire to get back out there and do more.

soon i will leave that employer of 33 years and seek new employment in either lobbying for more aids funding or teaching others to help prevent more infections. i have to follow this passion.

we passed our audition last night at the area high school they now plan to invite us back to speak to the junior high and senior high health classes.

one interesting comment we heard from this group kinda says alot about the purpose of this thread. the aids advisory committee was extremely thankful that someone with hiv finally agreed to come and talk to their group, as past speakers backed out at the last minute.

this is your typical upper end suburban high school whose students believe no one in THEIR neighborhood lives there with hiv. considering the fact that my wife and i live in another suburban neighborhood just like there's, we gladly blew that theory all to hell.

anyway, my point is that if we don't look for ways to get into these schools and destroy these myths, folks will continue to believe what has been fed them by the media, and the dreaded stigma surrounding this disease will continue.

This is exactly what I want to do! I want to get in front of as many people as possible and talk about it...share my story to start breaking down this horrible wall of stigma. I want to make activism my new career...but I just don't know how to do it...

The fear can be crippling, I know that from first hand experience...

Em, thanks for the links, I am looking at them, and I think I will be contacting a couple of them! This is awesome!

I can't believe I put myself out there...not because I am afraid of whatever negative consequences I may find, but because I have always been the one to be behind the scenes and never wanted to have the spot light on myself ( I am shy, really I am).But the fight against HIV/AIDS is my lifelong commitment and I will do whatever it takes to get the message out there.I also have to take a TB test today after work so I can start speaking in schools for the "Positive Speakers of Sillicon Valley"...Yes I am getting out there and I feel exactly like Jeromy

This is exactly what I want to do! I want to get in front of as many people as possible and talk about it...share my story to start breaking down this horrible wall of stigma. I want to make activism my new career...

Keep your ears and eyes open on December 1....we (positive pedalers) will get media coverage ALL OVER the country for our organized 27 mile bike ride to remember the 27 years of the AIDS pandemic and the lives of all the loved ones we lost Everyone is welcome on Positive Pedalers' continuing series of official training rides. Be a part of the San Francisco's ride to raise awareness in our fight to end HIV/AIDS. Cities from around the world will be cycling 27 miles to represent the 27 years of HIV/AIDS. We will meet at 7:15 AM in front of McLaren Lodge in Golden Gate park, in order to ride out simultaneously and in solidarity with other riders across the country. There will be red ribbons available at sign in, and everyone is encouraged to wear red today. There will also be a brief memorial before the ride. Positive Pedalers is a group of people living with HIV/AIDS committed to eliminating the stigma of this disease through positive public example.

It is a shame we still live in a world where two year old, Caleb Clover, was denied access this summer to a swimming pool and showers in Alabama, because of HIV status.

Rich

Logged

POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

and quick update....I don't have TB...yeah!!! got my test results last night and I will begin speaking in the schools here in the bay area. I also will start teaching art classes at the local AIDS center in San Jose. The Living Center is where people can find a safe place and they offer a lot to the poor and homeless HIV community here in Silicon Valley, so every Wednesday night is Arts and Crafts with Mr. Richard. A lot of the people that go there don't have anyone or any place where they can be open about HIV and many have a substance abuse problem. I am really excited about this....I am still struggling to get media attention to our AIDS ride on December 1st. No one is responding to my emails or phone calls...it is time to take step #2....go to the newspapers and TV stations in person and get on their faces

If anyone has any media contacts, please see if you can help me get some attention from them...

Rich

Logged

POSITIVE PEDALERS... We are a group of people living with HIV/AIDS, eliminating stigma through our positive public example.

hello everyone, just thought i'd update you on my efforts here in the cold and miserable uk. im recovering from a chest infection so had lost a bit of momentum but am back on it now.

world aids day events - we've finished planning the yearly vigil for sat 1st, plus are publicising a 'wear red to work day' on the friday 30th nov and associated collections, also we've got a big public info bbc screen which is gonna have info on once an hour for awareness on the fri and the sat (good to have connections in the right places ) prepared by yours truly.

press - ive taken part an interview for times online for dec 1st on the US travel ban. thanks to emma/gemini for that one. monday im doing an interview for the local paper which will be in there on weds. me and another poz person in a double-page spread. using a fake name and no photo so being a bit cowardly/sensible. i quite like my house having windows...

harassing those in power re the travel ban - my mp hadnt got back to me so i emailed him again, this time a REALLY long email (3 1/2 A4 pages!). he's holding a surgery near where i live on dec 1st so ive told him im gonna come and speak to him there (so there's no escape!). i also asked everyone i know to contact their mp.

i think that's it for now, if i remember anything else!hope youre all goodxxxx

"I'm not keen on the idea of the afterlife - not without knowing who else will be there and what the entertainment will be. Personally I'd rather just take a rest." Oscar Berger, PWA: Looking AIDS in the Face, 1996. RIP.

I thought all day about your post and I came up with my personal opinions, but only one thing really came to mind that I'd like to dedicate to you girl...enjoy from one HIV positive human to another HIV positive human...

i myself, got on a roll like that last world aids day. there is no greater feeling than knowing, deep down in your heart, that you are doing your best to make a difference. keep up the good work!

my wife & i loved the annie lenox tune and want to know where we can get a t-shirt like the one they are wearing? does any one know? thanks newbernswiss.

2008 may be my year for changing careers......i hope to become a full time activist/lobbyist.hopefully i will land something that will allow me a chance to deal with this travel ban issue. it certainly brings back some harsh memories of my missed opportunity to be with my son when he returned from iraq ( see "flags of a father" april,2007 poz).

For us in Nigeria, HIV stigmatization is at its highest level. Almost every big bank in this land requires one to do HIV/AIDS test before an appointment can be offered. A christian university here also requires test for degrees to be awarded to graduating student, churches refuse to preside over marriage ceremonies that involve victims and the scorn from friends, brothers and sisters is disgusting. but the fight is on and we shall overcome. the stigma seems to be more painful than the virus.

Hi Kayode, i am glad to hear you keep on fighting, it is true that sometimes the stigma seems to be stronger than the virus but slowly the truth will come to the light and show that stigma is just plain ignorance.

Here in my country where everybody is hidden i have had a couple of good experiences disclosing my status to people... to friends, to unknown people on the street and even to people who wants to flirt with me. Sometimes i fear they will go running away scared.. but my friends tell me everything will be fine and that they know it is a common issue nowadays, people who try to date me dont go running, it is truth they don't want to flirt anymore... but they seat next to me and we keep on talking about life and hiv. Some of them have become good friends and have learnt that stigma is wrong and that ignorance cannot last forever... I am sure it won't.

For us in Nigeria, HIV stigmatization is at its highest level. Almost every big bank in this land requires one to do HIV/AIDS test before an appointment can be offered. A christian university here also requires test for degrees to be awarded to graduating student, churches refuse to preside over marriage ceremonies that involve victims and the scorn from friends, brothers and sisters is disgusting. but the fight is on and we shall overcome. the stigma seems to be more painful than the virus.

What is the name of the University? Is it safe to assume that if one tests positive they will not grant a degree? I would like to write a letter to the president of this university. Thank you.

One small step to be proud person living with HIV is to post a REAL PICTURE of yourself instead of cartoon characters, etc.Being confident to put yourself out there may help others to accept their status and be proud of what has made them who they are today. Its like first coming out and going to a gay bar and thinking, what if someone sees me here? The answer ... if they see you here than they are here for the same reason you are so whats the problem?

My motto is why should others accept you when your not willing to accept yourself?